March The National Service Framework for Long term Conditions

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1 March 2005 The National Service Framework for Long term Conditions

2 March 2005 The National Service Framework for Long term Conditions

3 DH INFORMATION READER BOX Policy HR/Workforce Management Planning Clinical Estates Performance IM & T Finance Partnership Working Document Purpose Best Practice Guidance ROCR Ref Gateway Reference 4377 Title Author Publication Date 10 March 2005 Target Audience Circulation List Description Cross Ref Superseded Docs Action Required Timing Contact Details For Recipient s Use The National Service Framework for Long term Conditions DH Long term Conditions NSF Team PCT CEs, NHS Trust CEs, SHA CEs, Care Trust CEs, Foundation Trust CEs, Medical Directors, Directors of PH, Directors of Nursing, Special HA CEs, Directors of HR, Directors of Finance, Allied Health Professionals, GPs, Communications Leads, Emergency Care Leads, Local Authority CEs, Ds of Social Services, NDPBs, Voluntary Organisations This NSF sets 11 quality requirements to transform the way health and social care services support people with long term neurological conditions to live as independently as possible. Although the NSF focuses on people with long term neurological conditions, much of the guidance it offers can apply to anyone living with a long term condition. NSF Good Practice Guide; NSF Information Strategy; Glossary of Terms; Supporting People with Long term Conditions An NHS and Social Care Model to support local innovation and integration. N/A Local NHS and Social Care organisations and their partners in other agencies can use the quality requirements in the planning, development and delivery of local services. The LTC NSF is a ten year programme for change Older People and Disability Policy Management Unit Care Services Division Department of Health Room 8E30 Quarry House Quarry Hill, Leeds LS2 7UE

4 Contents Ministerial foreword Executive summary Setting the scene 7 2 Quality requirements 15 3 Commissioning and clinical neuroscience networks 63 4 National support for local action 69 5 Next steps: Implementing the NSF for Long term Conditions 79 Annex 1 Acknowledgements, External Reference Group members and terms of reference Annex 2 Research and evidence Annex 3 References Annex 4 Incidence and prevalence of some neurological conditions in the UK

5 Ministerial foreword This National Service Framework (NSF) for Long term Conditions marks a real change in the way health and social care bodies and their local partners will work with people with long term conditions to plan and deliver the services which they need to make their lives better. The NHS has a tremendous record in saving lives and combating illness. Deaths from cardiovascular disease and cancer have fallen by 27% and 12% respectively i. But that is not enough. For many people living with conditions such as multiple sclerosis or Parkinson s disease the main issue, until science can find a cure, is improving the quality of their lives, supporting them to manage their symptoms and live as independently as possible. We now need to build on what the NHS and social services have achieved and develop services which can respond better to the needs of this group of people. The NHS Improvement Plan: Putting People at the Heart of Public Services sets a new strategic model for management of long term conditions through self care, disease management and case management. This NSF is a further demonstration of the priority health ministers attach to improving the lives of people with long term conditions by: giving people choice, through services planned and delivered around their individual needs; supporting people to live independently and play their full part in society; co ordinating partnership working between health and social services and other local agencies. This NSF also builds on Supporting People with Long Term Conditions An NHS and Social Care Model to support local innovation and integration, which introduces new management arrangements for transforming service delivery for people living with long term conditions. The NSF aims to make this new approach a reality for people living with long term neurological conditions. It is a very important step in delivering this strategic shift in the way in which health and social care organisations work together to support people with long term conditions. The NSF focuses on neurological conditions and its quality requirements are based on evidence from services for people with neurological conditions. But that focus on neurology highlights and sets in clear context issues which are also relevant to the millions of people living with other long term conditions such as arthritis. For instance, in showing the difference which can be made by putting people with long term neurological conditions at the heart of their own care, the NSF demonstrates the importance of the person centred approach for everyone who uses health and social care services. Similarly, the evidence in the NSF about the value of improving access to assistive technology and of opening up palliative care for people with neurological conditions can also apply to other people living with disabilities and persistent pain. i Department of Health statistics supplied in January 2005 show that the death rate from cardiovascular disease in people under 75 years of age has fallen by 27% since the baseline. The death rate from cancer in people under 75 years of age has also fallen by 12.2% compared with the baseline. 1

6 Change cannot happen overnight. It will take time to train staff and develop new facilities and services. That is why we are giving commissioners and providers up to 10 years to implement fully the recommendations of this NSF. However, there are changes which can be made to bring improvements in the shorter term. The NSF Good Practice Guide we are providing for care service professionals, together with the report of the Modernisation Agency Action on Neurology programme, will provide practical help to transform services. We will ensure that everyone living with a long term condition, and their families and carers, will be able to understand what help and support they can expect. Finally, we are working with the Health Care Commission and the Commission for Social Care Inspection to help them review and monitor service change. John Reid Secretary of State for Health 2

7 Executive summary Introduction 1. This National Service Framework (NSF) for Long term Conditions is a key tool for delivering the government s strategy to support people with long term conditions outlined in the NHS Improvement Plan: Putting People at the Heart of Public Services. 2. The NSF aims to build on proposed changes in NHS management and commissioning to bring about a structured and systematic approach to delivering treatment and care for people with long term conditions. It should be read alongside National Standards, Local Action: The Health and Social Care Standards and Planning Framework 2005/6 2007/8, which promises consistently high standards of NHS care across the country, and Supporting People with Long Term Conditions An NHS and Social Care Model to support local innovation and integration. The forthcoming Green Paper on the future of social care for adults in England will consult on how more joined up, responsive social care services may be achieved to enable people to live independently in the community. The NSF applies to health and social care services working with local agencies involved in supporting people to live independently, such as providers of transport, housing, employment, education, benefits and pensions. 3. At the heart of this NSF are the 11 quality requirements (QRs) set out in detail in Chapter 2. These are drawn from and mapped against the core and developmental standards in National Standards, Local Action, and are to be fully implemented by Chapters 3, 4 and 5 explain how these QRs could be delivered. They cover models for clinical neuroscience networks for commissioning and service delivery, initiatives to support local delivery and guidance on taking the next steps. Further advice is available in the accompanying NSF Good Practice Guide (see ). 5. The NSF does not address individual neurological conditions separately as there are so many elements of service provision common to different conditions. However, where appropriate, the QRs have a separate section addressing the needs of people with rapidly progressing neurological conditions, such as motor neurone disease, because of the need for services to respond quickly. 6. Although this NSF focuses on people with neurological conditions, much of the guidance it offers can apply to anyone living with a long term condition. Commissioners are therefore encouraged to use this NSF in planning service developments for people with other long term conditions. 7. Implementing this NSF will contribute to the following Public Service Agreement targets: to improve health outcomes for people with long term conditions by offering a personalised care plan for vulnerable people most at risk; to reduce emergency bed days by 5% by 2008 through improved care in primary care and community settings for people with long term conditions; to improve access to services, ensuring that by 2008 no one waits more than 18 weeks from GP referral to hospital treatment, including all diagnostic procedures and tests. 3

8 8. The NSF fully supports the concept of choice set out in Building on the Best: Choice, responsiveness and equity in the NHS. This aims to ensure that all people have a choice of when, where and how they are treated from onset of illness until the end of life. The quality requirements (QRs) 9. The QRs are based on currently available evidence i, including what people with long term neurological conditions told us about their experiences and needs. Quality requirement 1: A person centred service People with long term neurological conditions are offered integrated assessment and planning of their health and social care needs. They are to have the information they need to make informed decisions about their care and treatment and, where appropriate, to support them to manage their condition themselves. Quality requirement 2: Early recognition, prompt diagnosis and treatment People suspected of having a neurological condition are to have prompt access to specialist neurological expertise for an accurate diagnosis and treatment as close to home as possible. Quality requirement 3: Emergency and acute management People needing hospital admission for a neurosurgical or neurological emergency are to be assessed and treated in a timely manner by teams with the appropriate neurological and resuscitation skills and facilities. Quality requirement 4: Early and specialist rehabilitation People with long term neurological conditions who would benefit from rehabilitation are to receive timely, ongoing, high quality rehabilitation services in hospital or other specialist settings to meet their continuing and changing needs. When ready, they are to receive the help they need to return home ii for ongoing community rehabilitation and support. Quality requirement 5: Community rehabilitation and support People with long term neurological conditions living at home ii are to have ongoing access to a comprehensive range of rehabilitation, advice and support to meet their continuing and changing needs, increase their independence and autonomy and help them to live as they wish. Quality requirement 6: Vocational rehabilitation People with long term neurological conditions are to have access to appropriate vocational assessment, rehabilitation and ongoing support, to enable them to find, regain or remain in work and access other occupational and educational opportunities. Quality requirement 7: Providing equipment and accommodation People with long term neurological conditions are to receive timely, appropriate assistive technology/equipment and adaptations to accommodation to support them to live independently, help them with their care, maintain their health and improve their quality of life. i The evidence base for the NSF as a whole is described in Annex 2. ii Home in this context means the place where the individual chooses to live, which may be their own accommodation or may be a residential or care home. 4

9 Quality requirement 8: Providing personal care and support Health and social care services work together to provide care and support to enable people with long term neurological conditions to achieve maximum choice about living independently at home i. Quality requirement 9: Palliative care People in the later stages of long term neurological conditions are to receive a comprehensive range of palliative care services when they need them to control symptoms, offer pain relief, and meet their needs for personal, social, psychological and spiritual support, in line with the principles of palliative care. Quality requirement 10: Supporting family and carers Carers of people with long term neurological conditions are to have access to appropriate support and services that recognise their needs both in their role as carer and in their own right. Quality requirement 11: Caring for people with neurological conditions in hospital or other health and social care settings People with long term neurological conditions are to have their specific neurological needs met while receiving treatment or care for other reasons in any health or social care setting. Delivering change 10. These QRs are designed to put the individual at the heart of care and to provide a service that is efficient, supportive and appropriate at every stage from diagnosis to end of life. The emphasis throughout this NSF is on supporting people to live with long term neurological conditions, improving their quality of life and providing services to support independent living. The Department of Health (DH) is committed to ensuring policies are properly funded. As the NSF places no new requirements on local authorities and they, with their partners, are able to set their own pace of change within the 10 year implementation period according to local priorities, DH expects individual local authorities to take the NSF forward within their existing spending plans. 11. Implementing this NSF by 2015 will improve services significantly, not just for those with neurological conditions but also for many other people living with long term conditions. 12. This NSF is supported by a web based NSF Good Practice Guide, a NSF Information Strategy, a leaflet for the public and glossary of terms (see ). i Home in this context means the place where the individual chooses to live, which may be their own accommodation or a residential or care home. 5

10 1 Setting the scene Introduction 1. This National Service Framework (NSF) for Long term Conditions has been developed with the advice of an independent External Reference Group i. It sets out quality requirements (QRs) and evidence based markers of good practice which suggest how the NSF could be implemented locally to improve health and social care services for people with long term neurological conditions and their carers. It aims to promote quality of life and independence by ensuring they receive co ordinated care and support that is planned around their needs and choices. The QRs cover treatment, care and support from diagnosis to end of life. A NSF Good Practice Guide, a NSF Information Strategy, a leaflet for the public and glossary of terms are available online (see ). 2. The NSF applies to health and social care services. However, people with long term neurological conditions also need support with a range of issues including transport, housing, employment, education, benefits and pensions. For this reason, arrangements for working together with a full range of other agencies are vital to support people to live independently and to deliver key elements of the NSF. 3. The NSF does not address individual neurological conditions separately as there are so many elements of service provision that are common to different conditions. However, where appropriate, the QRs have a separate section addressing the needs of people with rapidly progressing neurological conditions (eg motor neurone disease) because of the need for services to respond quickly. 4. Although this NSF focuses on people with neurological conditions, much of the guidance it offers can apply to anyone living with a long term condition. Commissioners are therefore encouraged to use this NSF in planning service developments for people with other long term conditions. How this NSF fits into the changing NHS 5. The NSF is a key element within a wider package of initiatives to improve services for people living with long term conditions. In particular, the NSF should be viewed in the context of: The NHS Improvement Plan: Putting People at the Heart of Public Services; National Standards, Local Action The Health and Social Care Standards and Planning Framework 2005/6 2007/8; Supporting People with Long Term Conditions An NHS and Social Care Model to support local innovation and integration; The Prime Minister s Strategy Unit s project: Improving the Life Chances of Disabled People; The Public Health White Paper: Choosing Health; The forthcoming Green Paper on the future of social care for adults in England. i Details of the External Reference Group, including terms of reference, are given in Annex 1. 7

11 6. Chapter 3 of The NHS Improvement Plan: Putting People at the Heart of Public Services and Supporting People with Long Term Conditions An NHS and Social Care Model to support local innovation and integration demonstrate the high priority that the government gives to improving care and support and quality of life for people with long term conditions. This NSF is the next step in delivering real change in services. 7. The NSF builds on the management strategy described in Supporting People with Long Term Conditions An NHS and Social Care Model to support local innovation and integration in exploring how person centred care planning, information and support, self care, disease management and case management can be put into practice to transform services for people living with long term neurological conditions. Although there is substantial common ground between the NSF and this strategy, it is important to preserve the neurological focus in implementing the NSF and make sure that it retains its own discrete identity under the umbrella of the broader long term conditions programme. 8. The NSF fully supports the concept of choice set out in Building on the Best: Choice, responsiveness and equity in the NHS. This aims to ensure everyone has a choice of when, where and how they are treated and the right to choose where they wish to die. The NSF will also help to deliver Choosing Health, the government s White Paper on improving public health in England. Choosing Health aims to provide information, advice and support to give people the opportunity to make healthy choices and change their lifestyles to improve their physical, sexual and mental health and their well being. 9. This NSF concentrates on adult services but also takes account of other relevant NSFs, particularly those for children and older people. As a result, it highlights the fact that transition issues (eg when someone needing ongoing care moves from children s to adult services) need to be properly addressed to ensure continuity of care, support through life changes and that access to services is based on need, not age. Standards, targets and assessment 10. The NSF supports the NHS in working with social services and their partners at local level to plan and deliver services for people with long term neurological conditions in line with the national standards set out in National Standards, Local Action The Health and Social Care Standards and Planning Framework 2005/6 2007/ These standards include a requirement (Standard D2 on clinical and cost effectiveness) for people to receive effective treatment and care that conforms to nationally agreed best practice, particularly as defined in NSFs. Other standards particularly relevant to this NSF include those cited under Patient Focus (access to information, care planning and self care) and Accessible and Responsive Care. The QRs in this NSF are drawn from and mapped against these national core and developmental standards and this is indicated in a footnote on the first page of each QR. 12. National Standards, Local Action emphasises that all health and social care organisations, including NHS Foundation Trusts, should regard NSFs as part of their developmental standards. Their performance will be assessed not just against how they do on national targets but increasingly on whether they are delivering high quality standards across a range of areas, including NSFs. This NSF is for implementation over 10 years and local bodies can set their own pace of change within this period, according to local priorities. However, the Planning Framework makes clear that the NHS and local authorities will need to demonstrate that they are making progress in planning and developing the levels of service quality described in the NSF over the course of the three year planning period (2005/8). In due course, the Healthcare Commission and the Commission for Social Care Inspection (CSCI) may undertake thematic reviews of progress, jointly where appropriate. 8

12 13. Implementing this NSF will contribute to the following Public Service Agreement (PSA) targets: to improve health outcomes for people with long term conditions by offering a personalised care plan for vulnerable people; to reduce emergency bed days by 5% by 2008 through improved care in primary care and community settings for people with long term conditions; to improve access to services ensuring that, by 2008, no one waits more than 18 weeks from GP referral to hospital treatment (with all diagnostic procedures and tests completed during this period). 14. The NSF is supported by a web based NSF Good Practice Guide, a NSF Information Strategy, a leaflet for the public and glossary of terms (see ). 15. This NSF is based on the current body of evidence. Randomised controlled trials and other quantitative methodologies are not necessarily best suited to research questions about quality of life. Therefore, a new typology has been developed (and agreed with the Department of Health s Research and Development Division) for this NSF to review the evidence available. It separates judgements of research quality from descriptions of research design. This research typology is set out in detail in Annex 2 and a full list of references that support the QRs is in Annex 3. Evaluating services over time will be crucial to delivery, including considering the need for a primary research programme where appropriate. This evaluation will be most effective if it is based on sharing expertise within and between agencies and on building user and carer experience into service review and development. Background What are long term neurological conditions? 16. A long term neurological condition results from disease of, injury or damage to the body s nervous system (ie the brain, spinal cord and/or their peripheral nerve connections) which will affect the individual and their family in one way or another for the rest of their life. 17. Long term neurological conditions can be broadly categorised as follows: sudden onset conditions, for example acquired brain injury or spinal cord injury, followed by a partial recovery. (Note: stroke for all ages is covered in the NSF for Older People); intermittent and unpredictable conditions, for example epilepsy, certain types of headache or early multiple sclerosis, where relapses and remissions lead to marked variation in the care needed; progressive conditions, for example motor neurone disease, Parkinson s disease or later stages of multiple sclerosis, where progressive deterioration in neurological function leads to increasing dependence on help and care from others. For some conditions (eg motor neurone disease) deterioration can be rapid. (Note: dementia for all ages is covered in the NSF for Older People); stable neurological conditions, but with changing needs due to development or ageing, for example post polio syndrome or cerebral palsy in adults. 18. There is a wide variety of long term neurological conditions and people have very different experiences. Conditions may be present at birth (eg cerebral palsy) and some of these may be associated with varying degrees of learning disability. Other conditions appear in childhood (eg Duchenne s muscular dystrophy) or develop during adulthood (eg Parkinson s disease). 9

13 19. The time course of conditions also varies widely. The average time between diagnosis and death for someone with motor neurone disease is 14 months, while someone with multiple sclerosis may live with the condition for decades. Even within specific conditions, the needs of individuals, for example for social care support, vary widely. A key feature of this NSF, therefore, is supporting people with long term neurological conditions to live independently, often for many years. How many people are affected? 20. Taken together, neurological conditions are common. For example, 8 million people in the UK suffer from migraine i. Altogether, approximately 10 million people across the UK have a neurological condition ii. These account for 20% of acute hospital admissions and are the third most common reason for seeing a GP. Around 17 people in a population of 100,000 iii are likely to develop Parkinson s disease, and two people in a population of 100,000 experience a traumatic spinal injury every year iv. An estimated 350,000 people across the UK need help with daily living because of a neurological condition and 850,000 people care for someone with a neurological condition ii. How are people affected? 21. The diagnosis or onset of a long term neurological condition generally marks the beginning of profound changes in the life of the person and the lives of their carer, family and friends. It may affect relationships, career prospects, income and expectations for the future. 22. Long term neurological conditions can cause a range of different problems for the individual, including: Physical or motor problems, such as paralysis, inability to walk, fatigue, incontinence, sexual difficulties and, for some people, impairment of all motor functions. John (30) lives in Sheffield and was diagnosed with motor neurone disease in March He now uses a wheelchair full time because his balance is very poor. John also has major muscle wasting in his shoulders, arms and hands and has little use left in them. Motor Neurone Disease Association Sensory problems, such as loss of vision or hearing, pain and altered sensation. Gary was a young, active tetraplegic for nine years before developing appendicitis leading to peritonitis and death. Because of the lack of feeling associated with paralysis, he was unable to feel or complain of pain in the abdomen. He was admitted to a district general hospital. Like all individuals with tetraplegia, he did not exhibit the usual symptoms and signs associated with appendicitis and peritonitis. The diagnosis was made on post mortem. Midlands Centre for Spinal Injuries i See the epidemiological table at Annex 4. Note: stroke and dementia for all ages are covered in the NSF for Older People. ii Neuro numbers a brief review of the numbers of people in the UK with a neurological condition. April The Neurological Alliance. iii Journal of Neurology, March 2002, Vol 249, number 3, pp iv Spinal Injury Association reports 666 new patient admissions (equivalent to about 2/100,000) to spinal injury centres in the UK and Ireland in

14 Cognitive/behavioural problems, such as: lapses in memory and attention; difficulties in organisation, planning and problem solving; confusion; apathy; disinhibition and lack of insight into difficulties. People with these problems may need additional support to make decisions and take responsibility for their own care. Four years ago, Louise noticed that Robert s behaviour was becoming uncharacteristically erratic. He was verbally aggressive, and his behaviour in company and at work was insensitive. Robert denied there was anything untoward. After a year, multiple sclerosis was diagnosed, by which time Robert s confusion was more marked and his mobility was affected. Robert and Louise both stopped work as Robert couldn t be left alone. Robert continues to deny that anything is seriously amiss. Their daughter has become withdrawn and is badly affected by Robert s temper outbursts. We re in This Together, Carers UK, 1999 Communication problems, such as difficulties in speaking or using language to communicate and in fully understanding what is said or written. People with these problems may need additional support to access information or to communicate their needs and wishes. Sometimes people found it difficult to understand me. I got very frustrated especially when they just smiled, or nodded and pretended they knew what I was saying. In the end I just stopped trying I wouldn t answer the phone and I stopped going out. That was before I started speech therapy. Now I ve learned techniques to help me control my breathing and I speak more clearly. I m much more confident and last month I re joined the local bowls club. Parkinson s Disease Self care Manual, 2000 Psychosocial and emotional effects of the condition for the individual, such as potential personality changes after a brain injury and the emotional and psychological effects of living with a long term condition generally on the individual, their carer and family. These can include stress, depression, loss of self image and cognitive/behavourial issues, which may lead to relationship breakdown if not addressed. I wish I could still say that I felt something for John, but he s a completely different person to the husband I married... I feel like I m sharing a bed with a complete stranger... I don t know how long I can bear it. Wife of a man with severe brain injury Who will benefit from this NSF? 23. Although this NSF focuses on the needs of people living with neurological conditions, it will make an important contribution to delivering the government s overall strategy to improve NHS and social care support for all people living with long term conditions. 24. The quality requirements are derived from research and expert evidence specific to neurological conditions, but many elements of them are relevant to people with other long term conditions, for example: prompt diagnosis; providing information and support; person centred care and choice; 11

15 providing information and support for the safe and effective use of medicines; care planning and integrated service provision involving different agencies, including closer working between health and social services; planning and liaison when people make transitions between services; supporting self care and considering health promotion needs; prompt access to treatment which complies with National Institute for Clinical Excellence (NICE) guidelines and timely referral for appropriate specialist intervention; rehabilitation and support in the community and vocational rehabilitation; providing equipment and adapted accommodation; equitable assessment for fully funded NHS continuing care and adult social care under Fair Access to Care Services; providing palliative care to people who have conditions other than cancer; supporting carers; managing long term conditions effectively when in hospital (or other settings) for other problems. Improving service delivery Specialised services 25. In the Department of Health s guidance for commissioning specialised services, certain elements of neurological services are designated as specialised. These include neurology, neurosurgery, rehabilitation for adults with brain injury and complex disability. 26. In many areas, this has resulted in the concentration of such services in specialist centres. There are several hub and spoke and outreach models where staff from the specialist centres spend part of their time working in local hospitals and in the community. In some cases this has led to a clinical network which supports the development of local expertise and enables more treatment to be delivered closer to home, while still retaining access to specialist services for those who need them. Local services 27. Other services are commissioned and provided locally. These include community rehabilitation (and sometimes specific neuro rehabilitation); community equipment services; personal care services and respite provision. Close collaboration between health and social services is key to assessing local needs and commissioning co ordinated care. 28. General practice plays an important role in service delivery along the entire care pathway. Wherever primary care is mentioned in this NSF, it includes all health and social care professionals who are involved with people with long term neurological conditions in community settings. 12

16 The bigger picture 29. Consultation with service providers, people with long term neurological conditions and their carers has revealed examples of high quality services (see the Long term Conditions NSF: Good Practice Guide) but also great variation in levels of provision across the country. There is also evidence that people within black and minority ethnic communities experience greater difficulty in accessing neurological services. 30. Recent snapshot information from four local authorities (Richmond, West Sussex, Bath and Northeast Somerset and Essex) suggests that 50% of people aged receiving social services support have a neurological condition. If this were representative across England, it would equate to about 63,000 people aged with a neurological condition getting such help. This extrapolated figure suggests a significant level of unmet need across the country i. Supporting people with long term neurological conditions to apply for Direct Payments; assessments for social care services in line with guidance on Fair Access to Care Services and prompt and fair assessment of eligibility for fully funded NHS continuing care could help meet this need and is addressed in QR8. Steps to ensure equity and consistency of criteria and assessment processes, which include taking account of the needs of people with long term neurological conditions, will be part of ongoing work to improve the provision of NHS continuing care. Improving services 31. One of the distinguishing characteristics of this NSF is that it is about supporting people with long term neurological conditions to live as independently as possible. The need to address some fundamental issues about how people wish to live whether at home, with their families or in residential care has guided the development of the QRs. These QRs set out a clear vision of how to improve the quality, consistency and responsiveness of services and personalised care. They cover: providing information and co ordinated person centred care (QR1); improving access to neurological services for diagnosis and treatment (QR2); improving care of people experiencing a neurological or neurosurgical emergency (QR3); improving access to rehabilitation services so that people disabled as a result of a neurological condition can achieve and maintain the greatest possible level of independence and social inclusion (QR4 6); providing flexible services and packages of care to help people live as independently as possible according to their own choices (QR7 8); improving palliative care services for people in the later stages of their illness (QR9); supporting families and carers (QR10); providing appropriate neurological care in hospital and other health and social care settings (QR11). 32. Underpinning all of these QRs is the need at all times to: challenge discrimination and reduce inequalities, including those faced by black and minority ethnic communities, who may find it difficult to access neurological services; treat people with long term neurological conditions with respect and dignity and listen to and act on their views regardless of their age, disability, race, gender, sexual orientation and religion or beliefs. i Source: Jeff Jerome, Director of Social Services, Richmond Social Services. 13

17 2 Quality requirements Introduction 1. This NSF aims to transform the way health and social care services support people with long term neurological conditions to live as independently as possible. It puts the people who have these conditions, along with their family and carers, at the centre of care by setting out evidence based quality requirements (QRs) from diagnosis to end of life care. These are underpinned by evidence based markers of good practice which suggest how the NSF could be implemented locally. These QRs, together with the NSF Good Practice Guide, NSF Information Strategy, leaflet for the public and glossary (see ), will help health and social care professionals and their partners plan and deliver responsive, person centred services, taking into account the needs and choices of individuals. 2. The QRs focus on the needs of people living with long term neurological conditions but much of their content applies equally to people with other long term conditions. Anyone involved in care and service planning and provision for this larger group will find this document useful. 3. Where appropriate at the end of each of the QRs, there is a short section setting out how the markers of good practice apply to people with rapidly progressing conditions because of the need for services to respond quickly. An overview of the quality requirements QR1: A person centred service 4. QR1 underpins all the other QRs. The delivery of this core requirement will improve the co ordination of services and address many of the key issues service users and voluntary organisations have identified. These include information and the need for a holistic, integrated, interdisciplinary approach to care planning, review and service delivery involving a range of agencies. QR2 and QR3: Prompt diagnosis, appropriate referral and treatment 5. QR2 and QR3 set out how people with long term neurological conditions are identified and referred to appropriate specialist healthcare services as quickly and with as few intermediate steps as possible. Prompt action at this stage can reduce neurological damage, slow down the rate of disease progression, increase survival rates and improve the person s quality of life. In particular, these QRs aim to ensure that: a. there is early recognition of neurological symptoms both in primary care and acute and emergency settings; b. people who present with neurological symptoms are referred to specialist services quickly and the care pathway allows direct referral to a specialist in accordance with locally agreed protocols; c. people receive a prompt diagnosis; 15

18 d. people receive emergency care from staff with appropriate neurological and resuscitation skills and facilities; e. appropriate treatment is jointly agreed with individuals and begins as soon as possible; f. people receive safe and effective medicines, the use of which has been jointly agreed between healthcare professionals and the person. QR4 to QR6: Rehabilitation, adjustment and social integration 6. Neurological conditions can result in profound life changes. Skilled rehabilitation teams can help people make major physical, emotional, social and environmental adjustments so they can become more independent and enjoy a better quality of life. Rehabilitation can also prevent deterioration and secondary complications such as pressure sores. 7. Multidisciplinary teams of health and social care professionals usually deliver rehabilitation i. These teams can work in different ways depending on the setting and person s needs: a. Multidisciplinary working: some teams consist of a group of different professionals working alongside one another towards a common goal, for example, a review clinic offering a thorough reassessment of needs by a multidisciplinary team. Their interventions are delivered in parallel rather than in close collaboration. b. Interdisciplinary working: this involves teams taking a more integrated approach. They work together towards a set of agreed goals, often undertaking joint sessions. Team members have a fuller understanding of other members roles and skills and can work together in a holistic way, ensuring the various treatments complement each other. This approach is often seen in settings where staff are able to collaborate on a regular basis, for example, working in specialist neuro rehabilitation teams, either in inpatient rehabilitation units or in the community. 8. QR4 addresses early and specialist neuro rehabilitation in the context of inpatient or residential settings, with planned, co ordinated transfer to the community and re access as needed. QR5 addresses rehabilitation at home and in the community. It includes supporting people as they adjust to change and take part in leisure and other social activities. QR6 addresses work and vocational rehabilitation. It includes supporting people to remain in, begin or return to employment or other occupational activity. QR7 to QR11: Life long care and support for people with long term neurological conditions, families and carers 9. People often live with their condition for decades, so providing well co ordinated, long term support is at least as important to their quality of life as prompt diagnosis and early treatment of the condition. 10. Many people find it difficult to maintain an independent life, particularly in the face of increasing disability. This can lead to long term social and psychological difficulties for them and their families and carers. Providing personal care, support, equipment and accommodation planned around their needs and wishes can help them to retain their independence and remain in their own homes. QR7 addresses the provision of equipment and home adaptations. 11. QR8 addresses assessment of personal care and support. The assessment needs to take account of the person s physical, cognitive, psychological and emotional difficulties. It also needs to cover family circumstances, religious, cultural and ethnic needs. People s preferences about care setting, the scope for help and support to prevent deterioration, social isolation and increased dependence will also be important. i 16 Health and social care professionals on the team can include: doctors, nurses, physiotherapists, occupational therapists, speech and language therapists, social workers, pharmacists, dietitians, psychologists, chiropodists, podiatrists, orthoptists, art, drama and music therapists, clinical scientists, prosthetists, orthotists and counsellors. This list is not exhaustive.

19 12. QR9 addresses the need for palliative care services for people in the advanced stages of neurological conditions and the importance of enabling people to make choices about end of life care. 13. QR10 addresses the need to offer information, advice and support to families and carers. 14. QR11 addresses the provision of care in other settings, for example, during treatment for non neurological health problems. Good planning can ensure that the management of the neurological condition and the person s self care are not compromised. 17

20 Quality requirement 1: A person centred service i Aim 1. To support people with long term neurological conditions in managing their condition, maintaining independence and achieving the best possible quality of life through an integrated process of education, information sharing, assessment, care planning and service delivery. Quality requirement 2. People with long term neurological conditions are offered integrated assessment and planning of their health and social care needs. They are to have the information they need to make informed decisions about their care and treatment and, where appropriate, to support them to manage their condition themselves. Rationale Integrated assessment and care planning 3. People with neurological conditions can experience a wide range of complex physical, sensory, cognitive, psychological, emotional, behavioural and social difficulties 1 4, with a broad range of needs. An integrated approach to assessment of care and support needs and to the delivery of services is key to improving the quality of life of people with long term neurological conditions. There is evidence that: a. the most effective support for people with long term neurological conditions is provided when local health and social services teams communicate; have access to up to date case notes and patient held records and work together to provide co ordinated services 5 9. Social services tend to provide the greater part of support for people with relatively severe disabilities; b. an integrated system of assessment and care planning can prevent unnecessary reassessment and repetition of basic information. It also helps to ensure that case notes are complete and people are receiving appropriate services 10,11 ; c. broad based and holistic assessment by health and social care services 6,12 can lead to successful interventions, rehabilitation and care. These can: limit the development of predictable secondary consequences of disease 13,14 ; increase the effectiveness of earlier rehabilitation; promote improved quality of life for people, their families and carers 15,16 and improve opportunities for social participation; and d. people with long term neurological conditions have improved health outcomes and a better quality of life when they are able to access prompt and ongoing advice and support from practitioners with dedicated neurological expertise, such as specialist nurses. This can cover: managing their medicines; treatment of specific symptoms; help to understand their condition and its current and future management 17. Specialist advice and treatment can be cost neutral and may reduce admissions and length of stay and improve well being i This quality requirement supports Standards: C9, C11, D5, D6 and D7 Governance; C13, C16, D8, D9 and D10 Patient focus; C5a, C6 and D2 Clinical and cost effectiveness; C17, C18 and D11 Accessible and responsive care; C20 Care environment; C22a, C23 and D13 Public health. Public Service Agreement Objective II: improve health outcomes for people with long term conditions and; Objective IV: improve the patient and user experience. 19

21 Developing integrated care planning and review 4. The care planning process needs an integrated multidisciplinary team of people who have the appropriate training, expertise and skills and who are able to cross refer to provide co ordinated care 12,17,22, Successful care planning is person centred and recognises that needs will change over time 10,11, It may be a simple or complex process depending on the condition and the range of services needed 9,26,27. The care plan needs to be developed and agreed with the person and, subject to their agreement, with their carers and/or an advocate. The care plan is owned by the person, and the relevant multidisciplinary team members review it regularly with them. The professional developing the care plan has a role to help the person navigate their way around the health and social care system The care planning process is likely to include: a. assessing immediate needs and potential future needs, including risk assessment; b. assessing support needed to: maintain opportunities for independent living; delay deterioration in physical or mental health; and prevent social exclusion; c. reviewing treatment plans (see QR2); d. considering services and support to enable people to play a full, inclusive role in society, including housing, transport, benefits, education, careers advice, employment and leisure; e. reviewing information provision, including its timing and level of detail to ensure it is useful and appropriate; f. considering health promotion issues such as sexual health, weight management and smoking cessation and providing access to a full range of health promotion services; g. taking account of identified non neurological health issues; h. considering any care and support provided by family members/carers and how this might change over time (see QR10). 7. Some people with more complex needs requiring skilled multidisciplinary input from a number of different agencies will need an identified person who co ordinates care. The job title of such people currently varies (eg a care co ordinator, case manager or community matron). This role includes developing a comprehensive care plan involving a range of agencies and may involve arranging access to appropriate health and social care services. Ideally, services need to be commissioned from a pooled budget with the care plan acting as a passport to services. 8. Assessment and care planning are ongoing processes, dictated by the changing needs of the person and their family and carers. Regular monitoring and review processes are needed to ensure that: a. people know how to access services through self referral if their needs change. This may be through a practitioner with a special interest or another named contact; b. no equipment or services are withdrawn before a thorough reassessment of a person s needs has been undertaken; 20

22 c. there is continuity of health and social care services when a person s needs change or they move between services (eg between children s and adult services or when they move home to another area). For example, the transition of people with childhood onset conditions such as muscular dystrophy or cerebral palsy from children s to adult services needs detailed care planning (see Standard 4 of the NSF for Children, Young People and Maternity Services 30 ). Commissioners and service providers need to ensure appropriate services are in place to meet these people s continuing needs and to provide support for making life transitions. Standard 1 of the NSF for Older People 31 states that people will access services based on need, not their age so that, for example, older people who have or develop neurological conditions have access to specialist neurological services as well as to services for older people; d. there is enough flexibility to allow for both planned reviews and unplanned reviews when a person s condition suddenly deteriorates or their circumstances change (eg due to the illness of a carer); e. people s information needs are reviewed regularly, recognising that the need for information will change over time (see below); f. people have timely, regular medication reviews (see QR2). Information, advice, education and support 9. To become full partners in care, people have said that they need information, advice, education and support. People often live with a long term neurological condition and its impact for decades. Over that time many become experts in their condition and its management. Their knowledge, based on personal experience, can help professionals to support them The Expert Patient programme 33 is a self management programme which aims to improve quality of life by developing the confidence and motivation of people to use their own skills and knowledge to take effective control over life with a long term condition. In general, these experts report that their health is better, they cope better with fatigue, feel less limited in what they can do and are less dependent on hospital care. The programme suggests that such people will need to know how to: a. recognise and act on symptoms; b. make most effective use of medicines and treatments, including those approved by the National Institute for Clinical Excellence (NICE); c. understand the implications of professional advice; d. access social and other services including transport; e. manage work and access the resources of the employment services; f. access chosen leisure activities; g. develop strategies to deal with the psychological effects of illness. 11. Not everyone with a long term neurological condition will want to participate actively in their own care or be capable of managing their condition to this extent, particularly in the later stages when they may develop physical or communication difficulties. However, most will want to be involved in decisions about their care; to choose which treatment best suits their needs, and to share responsibility for managing their own condition in partnership with professional staff. 21

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